Boy, 2, is 'running around fine now', but parents 'know what will happen'

Boy, 2, is 'running around fine now', but parents 'know what will happen' Wilf Baker was diagnosed in February 2026 after his parents noticed he was 'slightly delayed' in sitting and crawling The parents of a boy aged two who is "walking, running and doing well at nursery" know it won't stay that way. He has been diagnosed with a progressive condition that could confine him to a wheelchair by the age of 12 and which can trigger serious heart, breathing and feeding complications. His parents said it felt like a "ticking time bomb". Amy and Steve Baker, both 41 and living in west London, say their "cheeky chappy" son Wilf was slightly behind in sitting and crawling and by 18 months had still not taken his first steps. The couple took him to their GP, followed by appointments with a paediatrician and physiotherapist, who reassured them there was "nothing to worry about", and Wilf eventually began walking at 21 months. In September 2025, Amy revealed she suffered a miscarriage, with subsequent testing confirming she was a carrier for Duchenne Muscular Dystrophy (DMD), a genetic condition that causes progressive muscle weakness. Wilf was tested and diagnosed with DMD in February 2026, with doctors warning that he could start to lose mobility from the age of eight. According to the NHS, while most people with DMD will reach adulthood, they are at greater risk of dying from heart or respiratory failure before or during their 30s. Amy, a branch merchandiser, and Steve, a commercial director, are now fundraising for a £2.4 million gene therapy treatment in the US, which they hope could slow the advancement of the condition. 'We know what will happen' Steve said: "You almost bury your head in the sand to carry on and it's a weird situation because currently Wilf's progressing – he's walking, running and doing well at nursery. But we know what's going on in the background and what will eventually happen. "I think we're still trying to process that, I'm not sure if we ever will. It feels like the situation is a ticking time bomb. My mind is split between feeling hopeful and hopeless." Amy and Steve revealed that they noticed Wilf was "slightly delayed" when it came to crawling and sitting up independently, and by 18 months, in May 2025, he had still not taken his first steps. According to the NHS, the average age for children to begin walking is 14 months. Amy said: "Doctors tell you not to compare your children to other children... and part of us was putting it down to his personality – we were trying to work out if he didn't want to walk or he couldn't walk." The couple took Wilf to their GP in June 2025, where he was subsequently referred to a paediatrician. Wilf eventually began walking at 21 months old in August 2025, and following his paediatrician appointment later that year, Amy and Steve said they were "reassured" that it "might just be a bit of a delay". Amy and Steve revealed he had been referred to physiotherapy, where they were reassured there was "nothing to worry about" apart from flat feet and flexible ankles. In September 2025, Amy disclosed she suffered a miscarriage at eight weeks, and testing of the pregnancy tissue revealed it carried the genetic variant associated with Duchenne muscular dystrophy (DMD). Subsequent testing in January confirmed Amy was a carrier for the condition. DMD is a genetic disorder which causes progressive muscle weakness, most commonly affecting boys, according to Great Ormond Street Hospital. It is triggered by a variant in the X-linked DMD gene, resulting in a deficiency of a protein called dystrophin. This causes muscle fibres to deteriorate and become replaced by fibrous or fatty tissue throughout the body's muscles, leading to a gradual decline in muscle strength. Amy said: "When I was told I was a carrier, the difficulty was I never had heard of it and once we researched it it raised a lot of alarm bells for us because there were a lot of symptoms we thought Wilf had." Steve added: "You sort of hope for the best, but you're starting to fear the worst." NHS explains DMD symptoms The NHS explains that DMD symptoms can include difficulties walking, running, jumping, climbing stairs and getting up from the floor. At their final paediatrician appointment in January 2026, Amy revealed she had brought up her results, after which Wilf underwent a blood test to check his protein levels, followed by a comprehensive genetic blood test. Wilf tested positive for DMD in February and Amy said it "felt like our world was falling apart". As far as they know, no other family members have the condition. In the weeks that followed, Steve said they were "just going through the motions", trying to "act normal" around Wilf while "falling apart behind the scenes". Their first appointment at Great Ormond Street Hospital in March, which Steve said "brought it all home" and made it "feel real", included difficult conversations about how his condition would progressively deteriorate. Amy explained: "They said he'll continue progressing, but be behind his peers, until he gets to about age five or six, and that's when we'll start seeing the decline. They said at age four he'll start taking corticosteroids to try to slow down the progression of the disease, and he could be in a wheelchair by age 12." He is currently being monitored every six months, though this will become more frequent over time. According to the NHS, those living with DMD may also require a machine to assist with breathing and a gastrostomy tube to aid feeding. Sufferers can develop bladder and bowel problems, muscle weakness, scoliosis and dilated cardiomyopathy – where the muscular walls of the heart become stretched and thin. Day to day, Wilf is running around and "enjoying life", while Steve and Amy are trying "not to fixate" on the future. Change of outlook Steve said: "Our family and friends have been amazing, but being around other people is sometimes hard and isolating as Wilf's diagnosis has profoundly changed us and our outlook on life." The couple have explored private gene therapy options worldwide, including a treatment in the US, which they say carries a price tag of £2.4 million (3.2 million dollars), excluding hospital and travel costs. They have launched a fundraiser, which has so far collected more than £18,800. Amy said: "We just want to do everything we possibly can for him and I don't want to look back, or more importantly him look back, and think we could have done more." Steve added: "We're desperate to do anything for our son, we couldn't just sit here and do nothing." Steve expressed a desire to raise awareness about the condition itself, while acknowledging that the advances in research seen today would not have been achievable without the families who came before them, sharing their stories and participating in trials. They are keen to keep that momentum going in order to spare other families from enduring the same heartache they have faced. To donate to their fundraiser, visit GoFundMe. To follow along with Wilf’s journey, visit the Instagram page.